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Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

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Please Help! Only 16.

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Please Help! Only 16.

Post  SoHelpless on Sat Aug 15, 2015 1:06 am

Hello. Now I am new to this site and reading all these posts really make me want to burst into tears. Two years ago I started to feel a burning sensation down below. I thought it was urinal track infections. I was too scared to even step foot into the doctors then. So about three months ago I visited the doctor and told her all my symptoms. She just gave me some tablets for an infection even though my sample came back negative. I went again two weeks after from the most horrific pain I have ever experienced to the point where I would cry and have suicidal thoughts. She gave me a swab which I personally did myself and the tests came back all good. I was practical avoiding a physical but a month after that it got so bad that I just. I could not take it. I was severely depressed. I had a doctor examine me and she said she saw nothing!! I was so upset and angry because I feel it! I feel like something is there. I was given ibuprofen and paracetamol and took 12 in total a day which helped with the pain. The pain then went but a couple of days it came back. I can't do this anymore I really cant. I am going for a hospital examination from a urologist soon but I feel as if she will not find anything. I am on the verge of breaking. Please somebody give me advice anybody!! I feel all alone
..

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Re: Please Help! Only 16.

Post  MensRea on Sat Aug 15, 2015 3:55 am

Hey SoHelpless,
I am really sorry for what you are going through. It seems that your pain is unprovoked right? It's a constant pain no matter if its touched or not. Can you tell me where your pain is located? You said you thought is a urine infection, does this mean that the pain is located around the urethra? I am not a doctor Razz but i am asking you because my mother had exactly the same symptoms. She is currently in remission, since she managed to change her eating habits.

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Re: Please Help! Only 16.

Post  SoHelpless on Sat Aug 15, 2015 8:42 am

The pain seems to be located around my urethra and just below it.

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Re: Please Help! Only 16.

Post  SoHelpless on Sat Aug 15, 2015 9:01 am

Yes I believe my pain is unprovoked definitely. A lot of people here seem to find changing their diet helps but im only 16 and still live with my family and have to eat the same things as my Mum believes that the problem is mentally as there is nothing physically to see that could be wrong.

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Re: Please Help! Only 16.

Post  MensRea on Sun Aug 16, 2015 3:26 am

Ok, you told me the pain is unprovoked, but if you touch the area near of the urethra, does the pain increase? Do you have also painful urination? Sorry for the questions:P but i have also unprovoked pain near the urethra [my mother's pain is little bit different] and i try to understand whether you are experiencing the same problem.

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Re: Please Help! Only 16.

Post  SoHelpless on Sun Aug 16, 2015 4:47 am

Yes painful Urination and When I touch the area thr pain increases.

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Re: Please Help! Only 16.

Post  MensRea on Sun Aug 16, 2015 3:23 pm

We have exactly the same symptoms and believe me it's not in your mind. I have vestibulodynia, and my doctor told me that also the area near of my urethra is part of the problem. I don't know whether your diagnosis will be same as mine, but i suggest you to see urogynecologist. What helps me, is drinking a lot of water, i also take calcium magnesium citrate pills, you can find them online and also amitriptyline [you need a prescription from your doctor]. Amitriptyline pills helps a lot with the unprovoked pain. You only need to find someone who also believes that your pain is real.

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Re: Please Help! Only 16.

Post  SoHelpless on Sun Aug 16, 2015 7:56 pm

Thanks a lot! I have made a appointment to see one in November, a long wait but I will definitely try and see if those pills work. Quick question did your doctor straight away realise what it was? If so what signs was there?

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Re: Please Help! Only 16.

Post  MensRea on Sun Aug 16, 2015 8:47 pm

Yes she did! It was very easy for her to realise what the problem was, since i have also provoked vulvodynia in the opening of my vagina. However, i have vestibulodynia for 10 years, but the unprovoked pain near of my urethra appeared three years ago [steroid creams are killers!]. If i haven't provoked vulvodynia, it would be more difficult for her to understand the nature of my pain. I am using also a cream, gapabentin 6%, it helps a lot with the unprovoked pain, but you need to ask your doctor to include it in the medical prescription. Btw, don't forget, DRINK A LOT OF WATER.

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Re: Please Help! Only 16.

Post  SoHelpless on Sun Aug 16, 2015 9:03 pm

Thanks a lot. How do you feel now? Does it still effect you as much as it did? I'm only 16 and don't want to have to be in large amounts of pain constantly.

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Re: Please Help! Only 16.

Post  MensRea on Sun Aug 16, 2015 9:23 pm

Before the treatments it was very difficult to sleep or concentrate. I had constant pain all the time, it's been two months since i started the treatments and i don't experience any unprovoked pain anymore, only provoked. But even the provoked pain is not like before at all. I have to put a lot of pressure in that area in order to feel any pain. I am trying now to reduce to the minimum the provoked pain, it needs time, but at least it does not interfere with my daily routine.

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Re: Please Help! Only 16.

Post  SoHelpless on Sun Aug 16, 2015 9:27 pm

Wow that is amazing. I only wish I could hopefully become the same. I will deifnetely try those Pills and do all I can to get better. Thank you a lot, Really gave me hope that I can solve this problem. Smile.

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Re: Please Help! Only 16.

Post  MensRea on Sun Aug 16, 2015 9:35 pm

Ah and something else!! Don't wear underwear in bed! This is a very good advice not only for people who have vulvar pain, but for everybody. Btw if you live in London i can recommend you some doctors.

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Re: Please Help! Only 16.

Post  SoHelpless on Sun Aug 16, 2015 9:52 pm

I live very close to London! Please give me the centres and doctors names I would love to get some help if These symptoms persist.

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Re: Please Help! Only 16.

Post  MensRea on Sun Aug 16, 2015 10:12 pm

Inbox! Smile

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Helpless

Post  BpCookie on Fri Aug 21, 2015 3:26 pm

Hello hun, I totally feel for you. To be so young and have to go through this. Never give up hope. Fight on until you find a Dr. who can help you. I have a different problem called Vulva Lichen Simplex Chronicus which causes constant burning. At first I would lay in bed crying and wanting to die. I had went from Dr. to Dr., tried lotion, oils, ointments, meds............but I had no relief. So, I decided to do my own research on line. This helped a lot!!! I would bring the names of different medications that I hadn't yet tried and would give the list to my gyno to get her opinion. In doing on line research I found a really good specialist. So, never, ever give up because there is a Dr. out there that can help you.

Here are some of the things that I have had to do to help my pain. I ONLY use free and clear detergents (no perfumes or dyes) do not use bleach, I use sensitive skin body wash (no perfumes or dyes) and only use water to clean my vulva area. Do not use powders, deodorants or douches. USE A and D ointment after every time you use the restroom. This protects the skin. Sit on an ice pack for about 20 mins at a time. If possible wear skirts. Also I have a prescription ointment called Lidocaine 5% and it numbs the skin.

I hope this helps honey. Your not alone.

hugs to you

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Re: Please Help! Only 16.

Post  SoHelpless on Sat Aug 22, 2015 8:47 am

Thanks that means a lot to me. I won't give up as I refuse to continually live with this pain. Yes it is quite upsetting due to how young I am and I just feel conatantly depressed about it. I hope to solve this problem soon and thanks to this support and website I never feel alone no more and I am dealing with it a lot better. x

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16 TOO

Post  EverythingIsDifferentNow on Wed Sep 09, 2015 10:40 pm

I'm 16 too, I had vulvadnynia like you.
Things that are causing ur vulvadynia:
-something is physically wrong with your spine or pelvis
-your diet

I have wayyyy more advice if u want reply back and email me

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Re: Please Help! Only 16.

Post  KajalMehta on Mon Sep 14, 2015 9:13 am

Hey SoHelpless,
I thing this may cause of kidney stone. I suggest you to have Sonography test.
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Re: Please Help! Only 16.

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